Smile, Kyle!

The days got away from me this month. I thought that as time went by and Kyle got older, I would be able to be more productive. I still think that's true, but Kyle has to get much older first.

His reflux picked up quite a bit in the early part of the month. After hanging out on such scintillating message boards like infantreflux.org, I decided that Kyle's Zantac was just not cutting it. We switched him over to Prilosec and after a few weeks and upping the dose, I feel like we might have a good handle on it. His crying has decreased substantially, and I don't have to hold him as much. I was holding him almost all day long, with just short breaks for pumping and eating. As soon as I would put him down, he would reflux and he choked on it almost every time.

Jeremy and I have adjusted to the button for Kyle's feedings. Because of his reflux, we have to spread his feedings out over an hour each time. We now hook him up to the pump for each of his feeds and let the machine do the work. Sometimes, exhaustion takes over and Jeremy will take a little snoozer with Kyle as he gets his milk.

The highlight of our month is Kyle's big milestone: smiles! Jeremy has been waiting since the NICU to see this little guy smile. When I am having a rough day getting everything done and feeling overwhelmed, Kyle can give me the biggest grin and make it all melt away. Everything that isn't getting done will still be there tomorrow, so I just try to relax and enjoy the baby grins.

We've had some follow-up appointments over the last few weeks and had some questions answered. Kyle's genetic testing came back normal. His DNA was all in the right order, everything was present with no extra material. We are still supposed to go in for a more thorough follow-up, but this was good news.

Kyle's speech pathologist (because speaking muscles are the same as eating muscles) wanted to perform a swallow study when he would be about 8 months old to see if he could handle thicker foods or solids. Kyle's ENT put the kibosh on that very quickly and said he is to have nothing by mouth until after his cleft repair surgery. He said the size of the cleft is such that Kyle would aspirate any type of food he eats. The ENT also modified his previous diagnosis and said that he doesn't believe Kyle's vocal cords are paralyzed. They might not work properly because of the cleft, but they do move. Kyle does cry and he can be noisy. I've never been so pleased to hear my child cry as when I realized that he was using his voice.

We plan on tube feeding Kyle for at least 18 months more. Once the reconstruction surgery takes place, his body needs to heal. We will then perform a swallow study and start the process of teaching him to eat. My research indicates that this can be a long process. After spending so long on a tube, most kids struggle to coordinate the muscles. We are lucky to have a pediatric feeding clinic close by because Kyle will be in food therapy post-surgery.

Kyle keeps growing. We have weekly weight checks. If I don't already have a doctor's appointment scheduled, we have a nurse that comes to our house to weigh Kyle. I so appreciate that. I did not want to be driving to the pediatrician's office any more than I have to. He has officially doubled his birth weight as of last Friday. He now weighs 9 lbs, 6 oz.

Hoppy Easter!

Blessing day

Kyle wore this snazzy outfit (first one that isn't pajamas) because Jeremy, with some family and friends, gave him his baby blessing. This is usually done at church, but because of Kyle's health problems, we did it at our home this past Sunday.

We've pretty much stayed home with Kyle since he's been born, except for doctor appointments. And I hate those because Kyle has reflux and food comes shooting out whenever he is in his car seat. We don't have people over either. But for his baby blessing, we made exceptions. We had my sister and her husband, my brother and his family, and two families that helped us so much. Also, through Skype and Facetime, we had Grandma Horner, Aunt Melissa, and my parents join us as well.

After the blessing, most people stayed for Jeremy's mom's epic lasagna. It was nice to have people over again, although we are going to wait a few more months before doing it again.

Kyle's portraits

We got pictures taken shortly after Kyle came home from OHSU. As usual, I love them! He's already grown so much, it's crazy!

Storytime

I have to post this sweet picture. It helps me get through days like today where Blake breaks everything in sight and doesn't listen to a thing I say.

Big week for Kyle

We went from this...


to this...

I love having the button instead of the tube. Now we just hook him up when we need to feed him. Otherwise, he is free as a bird and can move without it getting in the way.